Nina Chesworth walking for Esme's Umbrella

Steps for CBS

Audio Player

Hi lovelies,

I have been a busy bee since my last blog, not because of the usual summer activities, but because I set myself a challenge and this has been my focus. At the end of last year, I decided that I was going to walk from Exeter to Land’s End. I have family there and very fond memories of the area. Making this decision I expected that walking this distance would be the main challenge, but with the popularity of staycations this year, the logistics around the walk became an impossible obstacle. Sadly, walking in Devon and Cornwall was not to be so I decided to have a staycation myself and walk in and around my home city of Manchester. This was an early set back, but realising that this meant having my home comforts throughout the challenge softened the blow and helped me get over it! 

So what was the challenge and why did I set it?

Exeter is 128 miles from Land’s End. So, I rounded down to 100 and aimed to cover 10 miles a day over 10 days. That was the challenge sorted, I just had to plan and train and looking back, this took more energy than the actual walk! The planning in my mind was easy but planning the routes and getting these down to share with people was difficult. There are many websites offering route plans and maps, but like a lot of websites, not all of them are accessible. I didn’t let that stop me and enlisted the help of Steve to plan routes. 

My training progressed slowly at first as I was not at my fittest, but with the encouragement of a personal trainer I built up my leg, core and upper body strength. My love of yoga has deepened and I attended my local class regularly. And because of this my lovely yoga instructor and fellow class member volunteered to walk one of the days with me. They were two of a small army of friends and family that I convinced to walk with me. Everything was falling into place. I was getting fitter, people were committed and all I had to do now was get t-shirts, leaflets and umbrellas printed. 

I wanted this merchandise so that I could raise awareness of Charles Bonnet Syndrome (CBS) whilst walking around Manchester. One of my lovely clients who has her own PR company kindly offered to help get the word out about the walk and why I was doing it. The big start day had arrived and that morning I was live on BBC Manchester Radio Breakfast show. I was a little nervous about starting the walk but I was ready to start shouting from the roof tops about this condition in order to help others.

On the first day we stopped a lady to ask for directions as we got a little lost or should I say my guide volunteers did! I didn’t mind, it added to the fun. It turned out the lady’s elderly mum had begun to lose her sight and was mentioning she was seeing figures in the kitchen and insects crawling in the living room. I couldn’t believe it, one day in and a chance meeting proved that more awareness was needed about CBS. This really spurred me forward and later in the challenge when it was getting harder and harder to get out of bed in the morning, I remembered that lady and her mum. 

That is exactly why I was doing the walk; it was not just a personal challenge and an opportunity to get fit. It was for all of the people out there that maybe experiencing hallucinations. The people who are at the start of their journey or the ones who have been living with it in silence. I wanted to do it and make a load of noise about CBS for them, to show that there is support out there, that it is a valid condition and they are not going crazy. It can be a very difficult thing to come forward and share your experiences, especially if you think people will not believe you. I know as I speak from personal experience.

The rest of the days flew by, it all felt like a blur when I was in the mist of it. By day 8 my body began to ache, my feet begun to hurt and feel flat but my legs were holding up, all that strength building and eating well before and during the challenge was worth it. The whole experience has shown me how important exercise and staying healthy really is. Looking after myself helps me adjust to living with CBS. It helps physically, losing a few pounds and fitting back into a favourite pair of jeans is a bonus, but it also helps me mentally. 

At the start I thought the physical challenge of the walk would be the hardest aspect, but to my surprise it was the mental challenge. I have always thought of myself as a resilient, strong-minded person, but there were times when I was soaking in the bath after a day of walking thinking I could just stop now, I have done over 50 miles it would be fine! Then I thought of the times in my life where things got hard and I wanted to give up and I didn’t. The main one that comes to mind is my journey with technology since losing my sight. There were numerous moments when I could have given up but I pushed myself and now I wouldn’t be writing these blog post for you to read if I had not persevered. Just like if I had given up on that walk, I wouldn’t have got the message out there and created the awareness for the condition on the TV and in the papers. The story was featured in the Manchester Evening News, I love Manchester, the BBCNorth West and Granada Reports on Itv North West. I am so grateful to all of these outlets for helping to create more awareness of the condition.  

I made it to the last day with the support of friends and family. My gratitude to them is beyond words, not only for helping me achieve this walk but their support with everyday living. When you are faced with difficult things, whether they are unexpected or chosen, you see who is there for you. I am grateful to them!

Crossing that finish line with Dylan by my side and friends and family behind and in front of me I couldn’t help feel overwhelmed and blessed. We had a lovely celebration thanks to a new friend. She set up a marque with bunting, balloons and prosecco, brownies and my favourite scones. It was such a special time and I am so glad everyone got to share that celebration with me. I think it shows that even when times are hard there is always hope and good awaiting you at the finish line. 

Thank you to anyone who followed me through my walking challenge and if you didn’t manage to keep up, all the posts, videos and links are on my social media outlets, Twitter @blind_but_sound and Instagram @blindbutsound and Facebook Nina Chesworth. It would be lovely to connect on here. Thank you also to the people who so generously donated. I know times are hard for people right now so this means even more. The money will provide support for others or go towards research which in the long term will help everyone. 

You can find out more about Esme’s Umbrella here or if you want to work with myself or Judith to help create more awareness of the condition or you have a loved one who you may think might be experiencing CBS you can email me on nina.chesworth@yahoo.com or info@charlesbonnetsyndrome.uk  

We are here to help and to make sure no one goes through this journey alone. 

Thank you again, sending lots of love 

Nina xx 

Nina

https://www.manchestereveningnews.co.uk/news/greater-manchester-news/blind-mum-whose-story-inspired-21278307

https://www.itv.com/news/granada/2021-09-02/manchester-woman-raises-awareness-of-little-known-hallucinogenic-condition

Leave a comment

Your email address will not be published. Required fields are marked *

Skip to content